any one with vestibular disorder ?? 2nd post

Discussion in 'Fibromyalgia Main Forum' started by FOYBOYFOY, Sep 23, 2006.

  1. FOYBOYFOY

    FOYBOYFOY New Member

    thanks for your time
    i have headaches/ dizzyness and just want to lay down. this occurs when i sit or lay down. i have a hard time reading, computer stuff or just removing my glasses. my neurologist thinks it might be positional vestibular disorder. thanks doc just what i need another incurable condition !!!!!!!!!!!!!!!! GOD BLESS AND HAVE A GREAT WEEKEND FOY
  2. Slayadragon

    Slayadragon New Member

    I have a thing called BPPV (which is something like "Benign Positional Paroxysmal Vertigo"). It makes the room spin around when I move my head in a particular way, sometimes making me nauseated to the point of vomiting. It is supposedly caused by loosened calcium carbonate crystals in the inner ear.

    If this sounds like what you may have, please let me know and I can share with you the information that I have about it.

    Good luck!
  3. cats3

    cats3 New Member


    Hi

    I have vestibular neuritis (inflammation of the inner ear) in my left ear.

    There are days it doesn't bother me at all and then there are the days I can't take the pain and dizziness etc.

    I can get dizzy just standing still---oh what fun.

    There are some things I can't watch on TV since it will make me dizzy -- like the ocean, roller coasters, and car races

    In the beginning I would get dizzy driving my car which was real fun. I took meds for over a year to stop the dizziness.

    Don't remember the name of the meds I took.

    There is a good web site that talks about vestibular disorders it is called Vestibular Disorders Association.

    Take care
  4. FOYBOYFOY

    FOYBOYFOY New Member

    bingo thats it, they gave me one exercise to do . do you also get like you want to lay down for hours on end ? im going in for a second mri on my brain this coming week. how long have you had this ? does it get better ?
    thx foy
  5. Slayadragon

    Slayadragon New Member

    I am going out right this minute and so don't have time to devote the time that I need to your post at the moment. I will get back to you soon, tonight if I can.

    Meanwhile, here is a good article on this condition:

    http://www.dizziness-and-balance.com/disorders/bppv/bppv.html

    Hope you have a good day....
  6. GBHope

    GBHope New Member

    Have had this problem from the beginning. It started that way. Was diagnosed with vestibular neuritis of the vestibular nerve by the neurologist. I fully sympathize. I find the lorazepam I take at night helps my dizziness the next day and also when it is acting up and flaring real bad, because of the inflammation in my body, anti-inflammatories work well. I wish you luck. It's very hard to live with. I'm dizzy to some degree everyday.

    GBHope
  7. Slayadragon

    Slayadragon New Member

    Okay, here's my story.

    In 1995, I was learning to ice skate and fell down on the back of my head. I lost consciousness briefly and went to the emergency room. They took an X-ray of my head and then sent me home (actually to my hotel).

    The next morning I woke up and the room was spinning around violently. I vomited several times. I went to the emergency room and they did a CT-scan of my head. They said they didn't find anything of significance, gave me some kind of anti-nausea drug (can't remember the name....very exhausting to take) and sent me away.

    After about a day, the nausea went away. I had other aftereffects from the head injury (loss of concentration, anxiety, etc.) but no more vertigo or nausea.

    A couple of years later, I went to an osteopath, who did some cracking stuff on my back (including my neck). The next day I got the same symptoms as I did right after the head injury. I called the osteopath and he blew me off (said something stupid like "you must be going back through it"). I took a bit more of the stuff that they had prescribed at the hospital right after my head injury. By the time the one dose of medicine I took had worn off (in several hours), the vertigo was no longer present without it.

    A couple more times over the next eight years, I had some episodes where the room felt like it was spinning around. (One time was after a violent sneeze; I'm not sure what could have prompted the others.) The sensation lasted for only half an hour or so when I was in certain positions, and I didn't have any vomiting.

    About three months ago (12 years after the head injury), I happened to be out of town. I noticed that the room started spinning and that I felt sort of nauseated when I held my head in certain ways. It wasn't debilitating, just sort of unnerving.

    The day afterwards, the room started to spin around violently and I vomited several times. This continued for hours. Remaining in a specific still position in bed stopped it temporarily and for the most part (i.e. I was still feeling a little spinning but not enough to make me vomit). However, as soon as I would roll over even a bit (much less get up), it started again.

    I was by myself and didn't especially want to call an ambulence to take me to the emergency room (that seemed sort of drastic unless I really had no alternative), and so I tried to consider what the problem might be and how I could fix it. My first thought was that maybe it was an infection of the inner ear and that some decongestant would help. I happened to have some Sudafed with me, and so I took some of that. Within a short time, things became much, much more stable. I still felt a little queasy when I held my head in certain ways, but was okay enough to get to the emergency room on my own.

    There I met a very nice and extremely smart doctor who said he had attended a seminar on this topic at a medical conference about six months earlier. He examined me and then had me do some lying down/sitting up exercises while he looked at my pupils to see if they reacted as they do in BPPV (I think by flashing or something?). They did. He then told me about BPPV, including about how crystals dislodge in the inner ear and cause imbalance.

    I mentioned how much better I felt on the Sudafed, and he said he thought that I had a sinus infection that was pressing on the inner ear, making the symptoms much worse than would be with just the crystals. I've had sinus iinfections numerous times in the past, and so that made lots of sense to me.

    He then showed me how to do the exercises mentioned in that article and gave me some Antivert (meclizine). The Antivert (especially mixed with the Sudafed) worked pretty well, and I got home.

    Except for one time, all my sinus infections in the past have been caused by yeast. Antibiotics (and an antibiotic cream that my CFS doctor cooked up) did nothing or made the problem worse. Diflucan (an antifungal drug), on the other hand, invariably relieved my symptoms within one day. (The symptoms were primarily extreme sleepiness and fogginess, along with a large amount of postnasal drip and some sinus pressure/headaches.)

    I made an appointment with my CFS doctor and in the meantime decided to try taking the Diflucan (100 mg) on a daily basis. The vertigo symptoms remained with me (except when I was taking the Antivert and/or Sudafed) until about a day after I started the Diflucan. After that, I occasionally had a spell when the room would spin a bit (especially when I lay down or sat up quickly in a particular way), but there certainly wasn't any vomiting. After a couple of weeks, the symptoms died down to the point where I sometimes was getting a little bit of vertigo, but not anything that was worth mentioning.

    I stayed on the Diflucan for one month. I did the exercises that the recommended sporadically. Since stopping the Diflucan, I haven't had any symptoms to speak of.....just a little bit of unevenness if I move into the wrong position to quickly, on an occasional basis (a couple of times a week). I recently made a list of the health problems I currently was experiencing, and didn't even remember to put this on the list because it has been so slight.

    It was extremely lucky that I tried taking that Sudafed (even if it was for the wrong theoretical reason) and happened upon that wonderful doctor in the emergency room. (My CFS doctor might have come up with the answer on his own, when I eventually got to see him, but I'm not sure of it.) I realized that BPPV could be a totally debilitating disease to have over a long period of time, even if it was in a milder form than what I experienced. I was pretty scared that one awful day, both because I didn't know what was causing it and (more importantly) because I would have been totally incapacitated if it had continued. Probably some people do remain totally incapacitated with it over weeks or months (or even years). I can't imagine how horrible that would be.

    Please let me know how you're doing as time progresses. Good luck to you.
  8. FOYBOYFOY

    FOYBOYFOY New Member

    thank you sooooooooooo much for your long response, GOD BLESS YOU AND HAVE A GREAT WEEKEND FOY
  9. Slayadragon

    Slayadragon New Member

    For Forebearance
  10. Slayadragon

    Slayadragon New Member

  11. Slayadragon

    Slayadragon New Member

    To what extent do you address yeast?

    I'm writing a post to Connie that I'm going to put on the sinus board, although maybe I'll copy it on this one too.
  12. Adl123

    Adl123 New Member

    Dear Foy,
    I don't have many headaches, but I do have dizzy spells that are sometimes so violent that it is as if someone grabbed my by the shoulders and threw me . I usually hit the wall or something. This happens when I've overdone it.

    I had lots of tests but they were inconclusive, and my Dr. chalked it up to CFIDS.

    One time this happened at the top of a flight of cement stairs. I went rolling down and ended up with a broken leg.(I was really lucky!) At that time the diagnosis was "situational stress".

    So, who knows? I just do the best I can, and if I'm careful, I hope I won't have an more.

    Take care,
    Terry
  13. sydneysider

    sydneysider Member

    My type of dizziness is kind of like being drunk. It is constant, but varies in intensities. I was eventually diagnosed with right vestibulopathy. I had already been tested for this 20 years ago, but the test came back negative. A technician told me that it can depends HOW the test is done.

    I've been told that the cause is usually migraine, or antibiotics.

    I started getting severe headaches(muscle tension, not migraine) some 25 years ago. Last year I finally found out that I have disc problems in my neck.I realise now that this was the main cause for the headaches, and some other symptoms. I think the headaches may have caused the vestibular damage.

    Dizziness can be caused by various things, but I think that you need to get tests before jumping to conclusions.

    A drug called stematil helped me for some time, but eventually lost effect.

    For those with chrystals in their ears, I think I saw something on the internet about some head movement that can clear the chrystals out.
  14. Slayadragon

    Slayadragon New Member

    Read my post mentioning the Internet site for info on how to move the crystals out of the ears.

    I would think that if antibiotics are cited as the cause of dizziness, the dizziness would likely be due to overgrown yeast as a result of the antibiotics use. Why else would antibiotics cause that symptom?

    If, as my doctor says, yeast can grow _into_ the inner ears, it conceivably could cause dizziness that is different in manifestation than the crystals problem. For someone with CFS (or maybe fibro....especially with antibiotics use), it's increasingly seeming to me that yeast should be the first suspect for _any_ weird problem. That's certainly been the case in my life.[This Message was Edited on 12/20/2006]
  15. PVLady

    PVLady New Member

    My husband had this problem - Benign Positional Vertigo - it is caused by small calcium particles that get deep in the inner ear and cause all these symptoms.

    If you look up a doctor at UCLA - Dr. Robert Baloh - he cured my husband. I believe Dr. Baloh actually discovered this condition and the cure.

    He first tested my husband to bring on the symptoms, then moved him in a certain way that dislodged the particles in his ear - he had to sleep upright for three days and the condition never returned.

    He had been very sick for a year. Whenever he moved his head fast or in a unusual way he was very dizzy, sometimes very nauseated, and his eyes would move around.

    This is NOT incurable. Dr. Baloh does cure it. In fact the only patients he sees are with this condition - he is a professor at UCLA.

    See info below on Dr. Baloh:


    Robert W. Baloh, M.D.
    UCLA Neurology
    Reed Neurological Research Center
    710 Westwood Plaza, Rm C-246A
    Los Angeles, CA 90095-1769
    Phone: 310-825-5910
    rwbaloh@ucla.edu




    Educational Background:
    Post Graduate 1969-1972 UCLA Medical Center
    Los Angeles, California
    Residency - Neurology
    1968-1969 University of Pittsburgh Medical Center
    Pittsburgh, Pennsylvania
    Residency - Internal Medicine
    1967-1968 University of Pittsburgh Medical Center
    Pittsburgh, Pennsylvania
    Residency - Medicine

    Medical 1963-1967
    University of Pittsburgh
    Pittsburgh, Pennsylvania
    M.D., 1967

    Undergraduate 1960-1963
    University of Pittsburgh
    Pittsburgh, Pennsylvania
    B.A., 1963


    HONORS

    1995 Guest of Honor, 32nd Annual Meeting of the Spanish Society of Otorhinology, Madrid, Spain
    1994 Morris B. Bender Lecture, Mount Sinai Hospital, New York
    1992 Hallpike/Nylen Prize, Bárány Society Meeting, Prague, Czechoslovakia
    1987 Elaine GCF Tso Lecture, Centennial Conference, University of Hong Kong
    1987 E. Graeme Robertson Lecture, Annual Meeting of the Australian Association of Neurologists, Coolangotta, Australia
    1979-1986 Course Chairman, AAN national meeting
    1976-1977 Outstanding Teacher Award, UCLA Department of Neurology
    1972 Jean-Louis Riehl Award for Neurologic Research as a Resident in Neurology, UCLA
    1967 Magna Cum Laude, Medicine, University of Pittsburgh
    1966 Alpha Omega Alpha, University of Pittsburgh
    1963 Phi Beta Kappa, University of Pittsburgh
    1963 Alpha Epsilon Delta, University of Pittsburgh
    1963 Magna Cum Laude, Mathematics, University of Pittsburgh

    Clinical Specialty:
    Dizziness
    Vertigo
    Tinnitus
    Imbalance
    Migraine

    Research Interest:
    Vestibular physiology
    Aging
    Genetic mutations
    Ataxia

    SELECTED PUBLICATIONS:


    Baloh RW, Yue Q, Jacobson K, Honrubia V. "Persistent direction-changing positional nystagmus. Another variant of Benign positional nystagmus?" Neurology 45:1297-1301 (1995)

    Baloh RW, Yue Q, Socotch TM, Jacobson KM. "White matter lesions and disequilibrium in older people. I. Case-control comparison." Archives of Neurology 52:970-974 (1995)

    Baloh RW, Foster CA, Yue Q, Nelson SF. "Familial migraine with vertigo and essential tremor." Neurology 46:458-460 (1996)

    Baloh RW, Yue Q, Furman JM, Nelson SF. "Familial episodic ataxia: Clinical heterogeneity in four families linked to chromosome 19p." Annals of Neurology 41:8-16 (1997)

    Yue Q, Jen JC, Nelson SF, Baloh RW. "Progressive ataxia due to a missense mutation in a calcium-channel gene." American Journal of Human Genetics 61:1078-1087 (1997)

    Baloh RW. "Neurotology of migraine." Headache 37:615-621 (1997)

    Baloh RW, Corona S, Jacobson KM, Enrietto JA, Bell T. "A prospective study of posturography in normal older people." Journal of the American Geriatric Society 46:438-443 (1998)

    Yue Q, Jen JC, Thwe MM, Nelson SF, Baloh RW. "De novo mutation in CACNA1A caused acetazolamide-responsive episodic ataxia." American Journal of Medical Genetics 77:298-301 (1998)

    Baloh RW, Honrubia V. "Childhood onset of Benign positional vertigo." Neurology 50:1494-1496 (1998)

    Kerber KA, Enrietto JA, Jacobson KM, Baloh RW. "Disequilibrium in older people. A prospective study." Neurology 51:574-580 (1998)

    Hotson JR, Baloh RW. "Acute vestibular syndrome." New England Journal of Medicine (339:680-685 (1998)

    Buttner N, Geschwind D, Jen JC, Perlman S, Pulst S-M, Baloh RW. "Oculomotor phenotypes in autosomal dominant ataxias." Archives of Neurology 55:1353-1357 (1998)

    Baloh RW. "Vertigo." The Lancet 352:1841-1846 (1998)Baloh RW. "The dizzy patient. Presence of vertigo points to vestibular cause." Postgrad Med 105:161-172 (1999)
    Enrietto JA, Jacobson KM, Baloh RW. "Aging effects on auditory and vestibular responses. A longitudinal study." Amer J Otolaryngol 20:371-378 (1999)
    Ishiyama A, Jacobson KM, Baloh RW. "Migraine and benign positional vertigo." Ann Otol Rhinol Laryngol 109:377-380 (2000)
    Lee H, Lopez I, Ishiyama A, Baloh RW. "Can migraine damage the inner ear?" Arch Neurol 57:1631-1634 (2000)
    Baloh RW. "Treatment of the common causes of vertigo." J Audiol Med 9:135-159 (2000)
    Oh AK, Lee H, Jen JC, Corona S, Jacobson KM, Baloh RW. "Familial benign recurrent vertigo." Am J Med Genet 100:287-291 (2001)
    Tang Y, Whitman GT, Lopez I, Baloh RW. "Brain volume changes on longitudinal magnetic resonance imaging in normal older people." J Neuroimaging 11:393-400 (2001)
    Ishiyama G, Ishiyama A, Jacobson K, Baloh RW. "Drop attacks in older patients secondary to an otologic cause." Neurology 57:1103-1106 (2001)



    [This Message was Edited on 12/20/2006]
  16. Adl123

    Adl123 New Member

    Dear PVLady,
    This is valuable information. I live far from this Dr., but I just might phone and ask if they can refer me to someone in my area.

    Thanks,a lot,
    Terry
  17. PVLady

    PVLady New Member

    That is a good idea as Dr Baloh may be able to tell another doctor what to do. It was amazing and if you truly have this condition, I would travel to see him.

    It was very interesting what he did. My husband was so afraid but Dr. Baloh was very reassuring - it was a miracle to have him cured after suffering so long.

    Other doctors were just giving him compazine. It was horrible and completely disabling.

    He has to actually maneuver you around to make the particles dislodge from the inner ear. My husband had been suffering from this for months and one day I picked up a magazine called "Health" and there was the article about balance problems written by and about Dr. Baloh.

    I immediately made a appointment and we saw him the next day. After the treatment he had to sleep with his head elevated for three days - no more problem. This was about 4-5 years ago.

    Part of this condition also involves your eyes having a condition called nystagmus. I would just call Dr. Baloh's office and talk to his nurse and see what they say.

  18. Slayadragon

    Slayadragon New Member

  19. bobbycat

    bobbycat New Member

    Yes, I have it. It happened due to a car accident I was in recently. It is horrible. I am dealing with it as I write. It has gotten better. It was so bad I had to stop driving at night. And I should not have been driving in the day time. I have been going to therapy so they can retrain my brain. They use popiscle sticks and work with your eyes which makes you nausous. Your balance is off. When it first happen I was trying to load the new Norton on my comuter and it was making me sick looking at it. The good news is I am somewhat better. "When I work too much it gets bad and my balance is still really bad but my dizziness comes and goes where it was all of the time and never left me at first. Hope this helps. My doctors did tell me that FMS people do get this but that they mine was caused by the accident.
  20. Jeanette62

    Jeanette62 New Member

    PV Lady and Everyone,

    I've had a vestibular disorder for 2 1/2 years now caused by migraines. It's good to hear some positive feedback about Dr. Baloh. I considered seeing him after seeing a neurotologist and a neurologist who weren't up on current research and didn't come up with a dx for me. At the time I was so dizzy the thought of flying from the Bay Area then trying to navigate the LA area by myself was overwhelming. I went to an excellent balance clinic in Indiana on the way back from a vacation and had a friend pick me up from the airport. I didn't have to navigate anything.

    The manuever that Dr Baloh did is called the Epley manuever. Dr. John Epley lives in Portland Oregon and has been an avid researcher in balance disorders for years. When he first came up with his cure for BPPV, other doctors in Portland tried to have his medical license taken away. They thought he was a quack. Dr. Epley has come up with many other innovative devices for treating balance disorders in recent years that are either already on the market to sell to balance clinics or in the process of FDA approval. There was an excellent article about his history in a Portland newspaper in the last 6 months or so.

    Jeanette